Lyme disease counting is uncertain, imprecise

Nov. 18, 2012

A fox roams a small forested area in Dutchess County, where researchers are studying the role of predators in Lyme disease. Foxes help control the population of mice, a prime rodent that infects ticks with the Lyme pathogen. / Taal Levi/courtesy photo

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Poughkeepsie Journal

About the series

This is part 6 in a Poughkeepsie Journal series on the nation’s most common vector-borne disease. Go to www.poughkeepsiejournal.com/lyme to read previous installments, view videos and read reports on Lyme testing.

ONLINE

Go to www.poughkeepsiejournal.com/lyme to see: • Five previous reports on Lyme disease • An interactive map on Lyme disease rates • Replays of webchats on the investigation • Six videos from the investigative series • A Twitter feed with comments • Resources for Lyme disease • Links to related websites • Photos from the series

New York state — the veritable epicenter of tick-borne diseases in America — counted 23,600 cases of Lyme disease from 2009 to 2011. When the federal government posted the state’s numbers, however, only 13,500 were listed.

Those lost cases help explain why Lyme disease appeared to decline sharply in America last year, when many Lyme physicians say they have never been busier.

They also reflect a new reality: Cases of Lyme disease are so common in some places, monitoring them is simply too expensive and time-consuming — so much so that New York now allows its hardest-hit counties, including Dutchess and Ulster, to estimate cases — cases the feds do not count.

Precisely defining the tick-borne toll — officially 250,000 Lyme cases in America in the last decade — is a pressing issue nationwide and in the mid-Hudson Valley. In 2011, the U.S. rate hovered at eight infections per 100,000 people; Dutchess, Ulster, Columbia and Greene counties had rates ranging from 148 to 630 per 100,000. Each ranked in the top 10 nationwide in the last national accounting, with Columbia first and Dutchess second.

Lower counts invariably affect funding for research and prevention, say advocates, who fear uncounted cases will undermine the urgency of addressing an illness already mired in a controversy that pits Lyme-treating physicians against government overseers.

“It’s scary what the implications (of missed cases) could be,” said Pat Smith, president of the Lyme Disease Association, a national nonprofit organization based in Jackson, N.J. “Eventually what it will do is impact diagnosis and treatment of patients.”

Without question, Lyme disease affects tens, maybe hundreds, of thousands more people than the figures reported each year by the U.S. Centers for Disease Control and Prevention, according to studies of undercounts, say Lyme experts and government officials.

But while the CDC acknowledges undercounting, it says that does not mean under-diagnosis or inadequate treatment. Further, based on its accounting, Lyme disease is not an epidemic, the CDC maintains, instead describing it with a word less emotionally and politically charged: an endemic.

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“An epidemic is an occurrence of disease that is greater than normally expected,” said Candice Burns Hoffmann, a CDC spokeswoman. “Lyme disease is endemic in the Northeastern and upper Midwestern states. It’s commonly found there. It is not an epidemic because the number of cases is not unexpected.”

“To use the term ‘epidemic,’ ” agreed Phillip Baker, executive director of the American Lyme Disease Foundation, “would be overstatement and would unduly alarm the public.”

But a review of statistical reports as well as interviews with Lyme activists and physicians practicing in a dozen states suggest the extent of Lyme and other diseases carried by ticks is unknown, unmeasured — and growing in some places in numbers that may not be expected. Consider:

• The official Lyme disease count of cases rose 23 percent nationwide in the five years through 2011 compared with the previous five years. In the Northeast, counts grew in every state except Rhode Island: from 14 percent in Connecticut and 75 percent in Massachusetts to 187 percent in Maine and 432 percent in Vermont.

• Indicative of a rising trend, cases have even soared in the military, which saw a 242 percent hike in the same period, mainly at Air Force bases in the Northeast and Germany.

• The true count is muddied by underreporting and misdiagnosis, physicians and advocates say. While reporting has improved since studies showed three to 12 times as many diagnosed cases as reported, underreporting is still significant, physicians say, particularly in the South.

Epidemic or not — a distinction that would not necessarily change how Lyme is managed by the Centers for Disease Control — the national Lyme count peaked in 2009 at about 30,000 and dropped since, to 23,500 in 2011. But it may be a decline on paper only, as the hardest-hit states relax reporting requirements to reduce the burden on localities.

Estimating Lyme

Eighteen New York counties, including all in the mid-Hudson region, save staff time and money by not having to follow up with physicians on every reported Lyme case; instead, they estimate cases using a complex formula that counts cases with the distinctive Lyme rash and extrapolates the rest from a random sample. But that means thousands of cases cannot be submitted to the federal government, cases that alone accounted for about half the national decline last year.

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Similarly, in Wisconsin, ranked third for Lyme in 2011, officials only require the reporting of the 70 percent or so of cases that include rashes, according to the CDC; with 2,400 cases reported, that means about 1,000 cases left out.

Asked about the steep increases in cases from 2002-06 to 2007-11, the CDC took a shorter-term view, noting that cases nationwide dropped 25 percent from 2009 to 2010. “Among 12 high-incidence states in the Northeastern and mid-Atlantic regions, all but Virginia reported a decrease in confirmed cases,” the agency said in a report on its website, to which it referred a reporter.

However, the figures may reflect normal variations. From 2010 to 2011, CDC figures show Lyme cases rising in five Northeastern states, including 43 percent in Maine and 76 percent in Vermont, a Journal analysis shows.

Physicians who treat Lyme, many of whom were interviewed at a recent conference in Boston, almost universally believe the toll is growing and unrecognized.

“It’s spreading out like a web,” said Dr. Steven Bock, a Rhinebeck physician whose advanced Lyme patients often come to him with other diagnoses. Official counts would swell if these cases were included, said many physicians, who see theCDC’s stance on Lyme, including the label of endemic, as part of an effort to downplay the toll.

“This disease has been underestimated like crazy,” said Dr. Richard Horowitz of Hyde Park, who spoke at the conference of the International Lyme and Associated Diseases Society, a professional organization primarily of Lyme-treating medical practitioners. Horowitz, who lectured on Lyme treatment in China last spring, believes Lyme is a worldwide epidemic, driven by other increasingly common infections delivered by ticks, like babesia.

“It’s an epidemic,” agreed Dr. Carol Savage, a Harvard, Mass., family practitioner who, like others, said she is one of few physicians in her area to treat Lyme cases. “They’re closing their eyes and looking the other way.”

The CDC is highly suspicious of the society’s viewpoint, maintaining that its advocacy of longer-term antibiotic treatment can be harmful and even deadly; the agency has instead endorsed treatment guidelines of the Infectious Disease Society of America, which limit antibiotic treatment for Lyme to 28 days.

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In a recent book, guideline authors John J. Halperin and Gary P. Wormser, along with the Lyme foundation’s Baker, said portrayals of Lyme as “an epidemic, controversial and difficult to diagnose or treat” are fostered by “misinformed patient advocates and by a small cadre of their physician supporters.”

Lyme wars waged

In essence, the Lyme wars pit a group of scientists, with the might of the federal government and major medical journals behind it, against a group of physicians with significant treatment experience and a small but growing body of science published mainly in online and European journals.

To them, evidence that the problem is bigger and more intractable than officially recognized is in the sick patients they see every day.

A survey of 2,424 chronic Lyme patients last year, published in Health Policy, an online journal of the Netherlands-based Elsevier Co., showed that 38 percent had seen 10 or more doctors before diagnosis and, because of a paucity of physicians willing to treat them, 31 percent had traveled more than 100 miles for care.

In testimony last spring at a hearing called by U.S. Sen. Richard Blumenthal of Connecticut, an Orange, Conn., neurologist estimated that 350,000 Americans may be chronically ill with Lyme disease, with 40,000 new cases added each year. Dr. Amiram Katz, an adjunct professor at Yale, based the estimate on research that shows that in about 1 in 10 diagnosed cases of Lyme, the disease resists treatment, and that just 1 in 5 cases may be reported.

Before her own Lyme diagnosis, Savage, the Massachusetts physician, said she had been treated for three years for multiple sclerosis, on immune-suppressing drugs that are harmful to Lyme patients. Misdiagnoses — of fibromyalgia, rheumatoid arthritis and even Alzheimer’s disease — are common among advanced patients, Lyme physicians say, driven by what they say is a prohibitively strict CDC definition of Lyme. It requires, for example, that patients test positive for five of 10 markers; Lyme doctors say fewer or more specific markers can spell Lyme.

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Dr. Kevin Young, a family practitioner in Plymouth, N.H., who testified for a state law to protect physicians from professional discipline who treat outside the recommended guidelines, said the CDC’s Lyme definition requires that the signal rash be greater than 5 centimeters.

“Ninety percent of my cases don’t meet the definition,” he said.

Lyme physicians interviewed said the definition contributes to under-diagnosis, as smaller rashes are written off, often as spider bites, and doctors supplant their own clinical judgment for the CDC’s strict Lyme definition.

The definition also means that local authorities do not accept Lyme cases when tests are done by laboratories that use alternative markers for the disease. In California, one such laboratory, IGeneX Inc. in Palo Alto, confirmed 214 Lyme cases in 2009 that met the CDC standard and 30 more that met its own, according to Lymedisease.org, an advocacy group. But so many were rejected that only 117 Lyme cases were counted that year for the entire state — which includes many other laboratories. This is symptomatic, the organization believes, of extensive undercounting and under-treatment.

“Many doctors feel insecure diagnosing and treating without that little piece of paper,” said Phyllis Mervine, Lymedisease.org president and founder.

Against this backdrop, the size and implications of the Lyme endemic — or epidemic, as some believe — is an open and significant question.

In Connecticut, where Lyme first emerged, 20 to 25 percent of families have had a member with the disease, the state’s epidemiologist, Dr. Jim Hadler, testified in 2004. That year, when 1,350 cases were recorded, he said there were likely 34,000. The official count has nearly tripled since, even as state officials acknowledge they have reduced efforts to track cases.

Today, said Dr. Awais Malik, a family practitioner in Milford, Conn., caseloads are growing, adding, “There are so many more undiagnosed Lyme cases than diagnosed.”

Cases rejected

While Lyme disease is recognized in the Northeast and Midwest, patients and activists in Texas, North Carolina, Georgia and Florida told remarkably similar stories of policies that discourage reporting of Lyme disease and authorities who often discount confirmatory tests.

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Dr. Nina Pearlmutter, a Sunrise, Fla., internist interviewed at the Lyme conference, said Lyme cases she treats are routinely rejected for reporting by authorities who say the illness was contracted elsewhere, even among residents who never left the county.

Reporting is also hampered in Georgia, where the disease was never declared native, even after researchers in 1990 confirmed cases in 27 counties, advocates said.

“We hear from people getting it two and three times and families with multiple members infected,” said Liz Schmitz, president of the Georgia Lyme Disease Association, in a state where Lyme, with just 32 cases in 2011, is officially labeled rare. “This doesn’t occur in areas where Lyme disease is rare.”

In response to such assertions, the CDC referred a reporter to its website, which states: “While black-legged ticks exist in the southern U.S., their feeding habits in this region make them much less likely to maintain, sustain, and transmit Lyme disease.”

Dr. Kerry Clark, professor of epidemiology and environmental health at the University of North Florida in Jacksonville, disagreed. He said he found DNA from the Lyme spirochete in the blood of several hundred people from Florida and southern states, while a study at the campus found 48 percent of ticks and 90 percent of mammals were infected with the Lyme spirochete.

“Lyme disease is vastly more common down here than anybody has acknowledged,” he said. “The frequency of the disease is way beyond the expected level, and that’s the definition of epidemic.”

Similarly, a Texas A&M researcher, Dr. Maria Esteve-Gassent, said she preliminarily has found Lyme in half of 72 black-legged ticks in Texas, where just 28 cases were reported in 2011. A Corpus Christi woman, Chrissy Braugh, said her entire family of five has been infected, adding, “Lyme is not receiving the attention it so scarily deserves.”

For its part, the CDC statement said, “Lyme disease is a major public health problem … and the current system has done a good job of identifying who is at risk for the disease and where the disease is emerging.”

To Lyme physicians, the CDC’s work is not good enough.

Said Dr. Horowitz, “If you are not believing the doctors in the trenches, you are allowing this thing to spread.”